Reflecting

One year ago, on August 24, 2010, the words "Congenital Diaphragmatic Hernia" were introduced into our vocabulary. I remember the big, dimly-lit ultrasound room and our nurse and sonographer standing nearby and the kind eyes and voice of our perinatologist. I remember not crying but floating and spinning. I remember seeing our baby on the grainy black-and-white screen and hearing that he was very seriously ill. And our small world tilted a little.

Last week, Sam and I stopped by the Maternal Fetal Medicine centre to visit, back to the place where that diagnosis was made and where I had all those many ultrasounds, where I had an amniocentesis and a fetal echocardiogram. This is where I came for consultations with perinatologists and a neonatologist and our surgeon and where my polyhydramnios was monitored. Visiting there with my son was amazing. I saw Del who was there at the beginning and Roberta who loved me up right to the end and I left my blessings for Alison and Korinna and Kathy and Dr. Pollard.

Dr. Simrose came out and we both just started crying. I told her I remembered the day I asked her if we could donate our baby's organs if he died so that he would be meaningful to someone other than us. And she had said no but she also said that he was already meaningful and would be in ways we might not know for a long time. She remembered too and then she leaned in to our six month old Samuel and said, "and now you need those organs for a long life." It was beautiful.

I was happy to be back there with my amazing baby, to introduce him to these people who helped care for us when Samuel was still safe in my belly. At the same time, I knew that many of those couples in the waiting room were having the kind of dark emotions that we had in that place, and that these people who came out to celebrate Samuel with me for a few moments continue to have those painful meetings with other parents every day. I hope that Sam brought them a little light and hope because they made such a difference to us through their compassion-filled and difficult work.

What a difference a year makes. I thought of this on Friday as we celebrated Daniel's 9th birthday (the last of our four summer birthdays - whew!). It was easy and fun hosting his little friends for several hours. Last year, we took eight kids to Calaway Park in the 30-plus heat while I was pregnant and puking and newly terrified for my baby. Less fun. Our life now resembles our life then but is not the same. Chris and I are different, forever changed. Our kids are bigger and smarter in all the ways they would be with the passing of a year but are also wiser in other ways too.

And, of course, now there is this tiny person living in our house who is all, "hey feed me, hey play with me, hey change my bum, hey oxygenate me." He is the primary culprit behind all this new knowing and being.

Just had a bath and feeling a little resistant to the new prongs going on.

Things are good and we are grateful and relieved. I recently wrote that "I am full of happy" and this is true. However, I could have written "I am full of crazy" and this would also be true. I have lost it a few times and I want to admit it so that other mums bringing their babies home from the hospital don't think it's all sunshine and roses. Don't ask my husband about this because he will only make a traumatized face and then walk away stoop-shouldered. Poor man. 

I am so committed to being thankful for our blessings that I have not wanted to feel sad and anxious, like somehow that is a betrayal of my gratitude and happiness. However, those other feelings come up and bite me in the butt when I'm not looking. Sometimes I stumble upon a swell of grief or a sense that something bad is waiting to happen or an overwhelm that goes beyond the actual situation. I imagine that there is some built up stuff for me to sort through now, remnants of things I couldn't feel at the time because there was Just. No. Space.

And there is sadness still. I am sad that my baby sees so poorly. I can tell that I need only be about a foot away and I am totally gone to him. I sing and talk to him almost constantly so that he will know I am there. He can't process light well and he can't see things around him to make sense of his surroundings. I think it is part of why new situations are still a bit tiring for him. I know that it's workable, especially given what he's already come through, but I can't live the rest of his life thinking "oh well, at least he didn't die." So sometimes the sad shows up.

I am sad for my friend Arlene who is having to fight so hard against her cancer. I am sad for the people I lost while I was pregnant but couldn't properly say good-bye to - Gramma, my cousin Constance, my friend Gloria. I am sad for the other babies who didn't make it and sad for the suffering that I witnessed during our five months of hospital life. There was incredible beauty in that place but also incredible agony and some of that seeped into me.

I am sad because I know that this experience is but the tip of the iceburg, that mothers lose their babies all over the world every minute for reasons complex and ridiculous. The movie 'An Inconvenient Truth' says we must find the balance between denial and despair and I think that the past year has led me to scenes of life that are tipped toward despair. Some days I am aware that I am still getting my bearings.

I feel like I went on a really long trip. There were months backpacking through Hideous-Pregnancy-land with pre-natal appointments and death talk and physical complications. Then I spent months in Baby-Intensive-Care-land while recovering from a nasty case of post-partum fog. I actually lived there a long time, even though I showed up daily to feed and clothe my other children. I learned a different language and saw a lot of remarkable things and met truly amazing people. It was beautiful in its own way but I think I would rather not go back. Then they put me on the Recovering-baby-bus which is this excruciatingly long, winding way to get home and there were interesting experiences and lovely people but every day I thought, "Are we there yet?!"

And now I am back but the rest of the world went on while I was gone. Maybe I have a bit of reverse culture-shock like people describe when they go to Third World countries; they come home and everything is a bit too bright and the grocery store is totally over the top bizarre and First World stressors seem a little lame.

I am reverting to some normal now, even found myself getting frustrated with a dumb computer issue today. I'm finding some energy to reconnect with my friends in normal ways. Sort of. Conversation works best during those times when I am able to complete a sentence. I am planning to return to seeing some clients and I can see the runner in me showing up again. I laugh a little when I think of my initial declaration upon getting pregnant last summer, that I would be this healthy 40-something long-distance runner all through my pregnancy. Hmm. There were other plans for me!

School begins in just a few days and we will have new schedules to get used to. Samuel got a taste of being shuttled all over the place during our weeks of soccer camp and bike camp this summer. He did great and I actually managed to get them all and their gear out the door relatively on time. Now Sam and I are hanging out for a couple of days while Chris is camping with the big boys. Even if I had the wherewithal to go camping with my wee baby, I was too nervous about his oxygen and all those fires. So he will get a bath and extra mommy attention and we'll watch a chick flick tonight. Who knew only having one kid at a time was so easy?!

One of the things I know for sure from the past year: love is bigger than fear. Always. And so is relief bigger than overwhelm and gratitude bigger than sadness. Yes.

Corinne and Sam